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References Advisory Committee on Human Radiation Experiments 1996 Final Report of the Advisory Committee on Human Radiation Experiments. New York: Oxford University Press. American Association of University Professors 2001 Protecting human beings: Institutional review boards and social science re- search. Academe 87(3):55-67. Annas, G.J., and M.A. Grodin, eds. 1992 The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experi- mentation. New York: Oxford University Press. Association of American Universities 2000 Report on University Protections of Human Beings Who Are the Subjects of Re- search. Report and recommendations from AAU's Task Force on Research Accountability. Washington, D.C.: Association of American Universities (June 28). Barber, B. 1979 Some perspectives on the role of assessment of risk benefit criteria in the de- terrnination of the appropriateness of research involving human subjects. In Appendix to The Belmont Report: Ethical Principles and Guidelines for the Pro- tection of Human Subjects of Research. National Commission for the Protec- tion of Human Subjects of Biomedical and Behavioral Research. Washington, D.C.: U.S. Government Printing Office. Barber, B., J.J. Lally, J. Kakarushka, and D. Sullivan 1973 Research on Human Subjects: Problems of Social Control in Medical Expen- mentation. New York: Russell Sage Foundation. Barnbaum, D. 2002 Making more sense of "minimal risk." IRB: Ethics & Human Research May- June: 10-15. Barnes, D.M., A.J. Davis, T. Moran, et al. 1998 Informed consent in a multi-cultural cancer patient population: Implications for nursing practice. Nursing Ethics 5:412-423. Beauchamp, T.L., R.R. Faden, R.J. Wallace, Jr., and L. Walters, eds. 1982 Ethical Issues in Social Science Research. Baltimore, Md.: Johns Hopkins University Press. Beecher, H.K. 1970 Research and the Individual: Human Studies. Boston: Little, Brown, and Company. Bell, J., J. Whiton, and S. Connelly 1998 Evaluation of NIH Implementation of Section 491 of the Public Health Service Act, Mandating a Program of Protection for Research Subjects. Report prepared under a National Institutes of Health contract, NO 1 -OD-2-2 109. Washington, D.C.: U.S. Department of Health and Human Services. Bernard, H.R., ed. 2000 Handbook of Methods in Cultural Anthropology. Walnut Creek, Calif.: Alta Mira Press. 2001 Research Methods in Anthropology: Qualitative and Quantitative Approaches. 3rd edition. Walnut Creek, Calif.: Alta Mira Press. 183

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184 PROTECTING PARTICIPANTS AND FACILITATING SOCIAL AND BEHAVIORAL SCIENCES RESEARCH Blumberg, H.H., C. Fuller, and A.P. Hare 1974 Response rates in postal surveys. Public Opinion Quarterly 38: 113-123. Botkin, J.R. 2001 Protecting the privacy of family members in survey and pedigree research. Journal of the American Medical Association 285(2):207-211. Brainard, J. 2001 The wrong rules for social science? The Chronicle of HigherEducation. March 9. Carrillo, J.E., A.R. Green, and J.R. Betancourt 1999 Cross-cultural primary care: A patient-based approach. Annals of Internal Medicine 130:829-834. Centers for Disease Control and Prevention 1999 Guidelines for Defining Public Health Research and Public Health Non-Research Atlanta: Centers for Disease Control and Prevention. Available: http://www. cdc.gov/od/ads/opspolll.htm [4/3/03]. Chlebowski, R.T. 1984 How many protocols are deferred? One IRB's experience. IRB September/ October:9- 10. Cleary, R.E. 1987 The impact of IRBs on political science research. IRB May/June:6-10. Cooke, R.A., A. S. Tannenbaum, and B. .H. Gray 1978 A survey of institutional review boards and research involving human sub- jects. Pp. 293-302 in Report and Recommendations on Institutional Review Boards, Appendix. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Washington, D.C.: U.S. Government Printing Office. Czajka, J.L., and D. Kasprzyk 2002 Limiting Disclosure in Public Use Microdata: Background for the Next Gener- ation of Individual Tax Models. Final report submitted to Internal Revenue Service. Washington, D.C.: Mathematica Policy Research, Inc. (December 6). Dalenius, T. 1983 Informed consent or R.S.V.P. Chapter 4 in W.G. Madow, H. Nisselson, and I. Olkin, eds., Incomplete Data in Sample Surveys, Vol. 3, Proceedings of the Symposium. New York: Academic Press. Davis, T.C., R.F. Holcombe, H.J. Berkel, S. Pramanik, and S.G. Divers 1998 Informed consent for clinical trials: A comparative study of standard versus simplified forms. Journal of the National Cancer Institute 90(9):668-674. de Sola Pool, I. 1 979 Prior restraint. The New York Times December l 6 :E l 9. 1980 The new censorship of social research. Public Interest 59:56-68. Doyle, P., J.I. Lane, J.J.M. Theeuwes, and L.U Zayatz, eds. 2001 Confidentiality, Disclosure, and Data Access: Theory and Practical Applications for Statistical Agencies. Amsterdam: Elsevier North-Holland. Dunne, T. 2001 Issues in the establishment and management of secure research sites. Chap- ter 14 in P. Doyle, J.I. Lane, J.J.M. Theeuwes, and L.V. Zayatz, eds., Conf- dentiality, Disclosure, and Data Access: Theory and Practical Applications for Statistical Agencies. Amsterdam: Elsevier North-Holland. Ellikson, P.L., and J.A. Hawes 1989 Active vs. passive methods for obtaining parental consent. Evaluation Review 13 :45-55. Faden, R., and T.L. Beauchamp 1986 A History and Theory of Informed Consent. New York: Oxford University Press.

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